Mindfulness for Resilience in Illness: Managing Parent Stress When Caring for a Child With Chronic Pain

Welcome to the Mindfulness for Resilience in Illness: Support for Parents series. This is part two of a series of four articles on parenting a child with a pain condition. This installment discusses how to manage stress when caring for your child.

Raising children is stressful, and having a child with chronic pain presents unique challenges. It’s hard to care for a child who is ill, needs special attention, or faces struggles that you may have trouble relating to or perhaps never imagined. All of your attention is focused on the problem and trying to alleviate it. Over time this can wear you down. Understanding what stress is—and how we respond to it—can help you to manage these difficulties.

“What I found most challenging is, especially initially was the acceptance of the pain that it can be long term and there’s only so much you can do. I think those are probably the biggest things because again we don’t want anything to hurt our child and it’s – it’s hard to accept that there is something that you can’t change. There’s not just one little thing that’s going to make it all go away.”
-Mother of an 18-year-old girl with widespread pain

What is stress and the stress response?

Stress is a feeling caused by certain chemicals in the body that get activated when we experience difficult situations. Stress is what you feel when you are worried or uncomfortable about something. Stress can be triggered by having emotional conversations, driving in traffic, taking a test, and parenting children—especially a child with chronic illness.

What is the stress response? When experiencing stress, you may feel scared, anxious, tired, worried, or a range of other emotions. Stress can activate the “fight or flight” system in the body, which can cause you to get upset. You may even find that you are not eating or sleeping well. The stress response varies from person to person and may be different depending on the situation at hand. Watching your child experience pain and not knowing how to help may very well activate your stress response.

A key first step is recognizing that you are feeling stressed and knowing that there are steps you can take to manage it. For example, there are a variety of different relaxation techniques, which can be done alone or with your child, that may help. These techniques take time to learn, so it is important to develop the practice when you are not in a crisis situation. That way, these skills are available when you need them most.

Here are tips, including some relaxation techniques, to try when your child is experiencing pain. Try these on your own or with your child or other family members.

Breathe. Take five slow, deep breaths before you respond to your child’s pain. Slow deep breaths activate the part of your nervous system that calms everything down and tells your brain that you are not in danger (this engages the parasympathetic system or the “calm and connect system”).

Relax. Take five minutes to listen to a relaxation audio can make a big difference in your day. (Listen to an audio recording from the mobile app collection as part of this program).

Engage your body. Try a muscle relaxation exercise. You can do this by systematically tensing and releasing different muscle groups in your body. This will help you to become familiar with what tension, as well as relaxation, feels like in different parts of your body.

Speak a word of encouragement. Support your child or another family member (and ask for the same in return!).“You’re doing a great job concentrating on your homework.”
“I’m proud of you for going out to have lunch with our family today.”
“I really appreciated your help with the laundry.”

Distract and redirect. Get some distance from whatever is causing you distress. This allows your brain to focus on other things. You can even try distraction with your child, here are a few ideas:
Listen to your favorite song
Watch a movie or TV show you both enjoy
Ask about his/her day, or tell him/her about your day
Incorporate laughter – watch funny video clips

Have self-compassion. Don’t underestimate your ability to deal with your child’s pain flare-up! Think of the last flare-up your child had. What did you do that seemed to help? What didn’t work that well? Be kind to yourself even if you think you handled it less-than-perfectly.

Be mindful. Mindfulness training will help you be aware of the present moment without judging your experiences and allow you to cultivate a deeper sense of groundedness and peace. More importantly, it can help you avoid being controlled by daily stress.

Be in nature. Go for a walk outside even 5-10 minutes around the block can be extremely helpful for a change of scenery and a mini-escape. Practice mindful breathing while you’re at it.

Chill out. Splash your face with some cold water, take a warm shower, or soak your feet for a few minutes. Cold and warm water activate different biological responses in your body that help you feel calm and relaxed.

Connect. Find quality support from others in similar circumstance that offer understanding and hope,talk with loved ones who are good listeners, and share your stories. (see next installment). Know that you are not alone.

“…when I’m feeling anxious and stressed about maybe a doctor who doesn’t understand [or] a teacher at the school who you’re frustrated because nobody else seems to understand it. It helps to bring your own anxiousness [down]…maybe before you make that phone call before you write that e-mail to someone, you can take a moment to just say OK I need to I need to bring myself down. Let me stop for a moment. Let me breathe. I need to take some breaths. Let me count. … Just bring yourself down so that way you can respond in the best way because you want whatever is best for your child.”
-Mother of an 18-year-old old girl with widespread pain

Key takeaways

Stress is a normal reaction to difficult situations, but the body is not built to handle long-term stress, such as parenting a child with chronic pain.

Finding the stress management techniques that work for you—such as deep breathing, muscle relaxation, mindfulness exercises or even distraction—is key to resetting the mind and body and regaining control.

Research reported in this publication was supported by Eunice Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number R43HD09774. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.